A Journey of Living with Cerebral Palsy

Relationships

Today marks two weeks since I married the love of my life. I’m still catching myself saying my maiden name as opposed to my new last name, I still haven’t written thank-you notes, and there are wedding gifts still in their original packaging. But as I sit and reflect on my wedding day, I feel nothing but love and gratitude for the friends and family who helped to make it the best day of my life.

Like many girls, I spent my life thinking about what my perfect wedding day would be like. However, unlike most girls, my focus wasn’t on the details like the color scheme, flowers, table decorations, or the seating chart. I cared about one thing: the man who’d be standing opposite me as we promised to spend forever together.

As someone with a disability, I spent years wondering if I’d ever get married or even have a boyfriend. I didn’t know if I’d ever find someone who wouldn’t feel burdened by my disability. I couldn’t picture someone wanting to spend their life with someone who did not know what the future would hold for them physically and the level of help they’d need. I couldn’t picture someone not being frustrated by the intricacies of being intimate with me. I couldn’t imagine someone CHOOSING that kind of life and future for themselves.

Then I met my husband, and my whole world shifted. Together we learned how to navigate a relationship where one partner is able-bodied and the other is not. However, don’t get me wrong, that wasn’t necessarily a walk in the park. It took time, understanding, communication, and trust, and most of all, patience. But tackling those challenges early on meant we built our relationship on honest, open communication. And our relationship only grew stronger from there.

If you asked me as a child to picture the man standing opposite me on my wedding day, I wouldn’t have pictured my husband, but here’s why. I honestly didn’t think someone like him existed. I didn’t believe I’d find someone to love me AND my disability, while also being willing to take on the responsibilities that only a relationship like ours requires. But then the universe proved me wrong. And here we are, enjoying the early days of married life and brimming with excitement for what our future together holds.

So, to all the people out there with disabilities wondering whether they’ll get married one day, please know, it’s possible. I’m living proof. We are worthy of love, acceptance, and romantic relationships, so don’t let anyone say we’re not. Honestly, I think relationships with one disabled partner are even stronger than relationships where both partners are able-bodied. Because not only do we have to navigate the typical ups and downs of a relationship, we have to come to terms with the physical aspects too, and that makes our partnership even stronger.

In that sense, I am so grateful to have found a man who encourages my independence but also helps me when I need it. And that help isn’t tinged with feelings of resentment or being a burden; it’s filled with love. I know this because I know my husband, and the love we have for one another is visible. I saw it plain as day on our wedding day. I saw it in the look in his eyes when we promised forever to each other surrounded by our friends and family. I heard it in the words of the hand-written vows he wrote. And I felt it in the way he held me during our first dance. And I see it today, just in the way we navigate our day-to-day lives, allowing each other to grow as individuals and together as a couple. And in the conscious decision we make to choose to love each other, every day, over and over, from now until forever.

Winter is my least favorite season. Though I love snow, cold weather is really hard on me as someone with CP. I’m naturally very stiff as it is because of my disability, and cold weather makes it 5,000 times worse as my muscles tense up the moment cold weather arrives. Even when I put a ton of layers on, it still seems to happen. The coldest of air cuts straight through to my muscles I guess.

Despite hating cold weather, I’m excited for this month this year. This month will mark 4 years since my now-fiance and I have been together. The 8th of this month will mark 8 months until we get married. And during the last weekend of the month, I’ll be heading to Chicago with my mom to go wedding dress shopping with my best friend. It may seem strange that I’m going all the way to Chicago to shop for a wedding dress, but not to me. I knew within of year of being friends with my best friend that it’d be a friendship to last a lifetime. I was the maid of honor in her wedding. She’ll be the matron of honor in my wedding. And the thought of trying on wedding dresses without my best friend by my side is unimaginable.

Strangely enough, I’m a bit nervous about going shopping for a wedding dress, though I’m definitely excited too. I’ve never been a fan of dresses, but I’m determined to find a wedding dress I love. The hard part will be finding something that not only works with my body but is something I can easily move in and feel comfortable in. Because of my CP, I have quite a sway in my back that I’m really self-conscious about, so that has me leaning towards a “ball gown” type look because I don’t want something that will accentuate the curvature of my back. At the same time, I don’t want something super heavy because walking in normal clothes is difficult enough. Adding in tons of fabric and lots of length for the pretty look may be against me. I doubt it’ll be easy to find a “ball gown” type dress that is lightweight, but we’ll see. As much as I want to find a dress I love, realistically I need to find something I can easily move in and that I’ll be the least likely to trip in. I fall very easily and often without warning, and just the thought of falling in my wedding dress on my big day is incredibly anxiety-producing. I know it’s not something I should worry about, but because of my disability, I can’t help it. I have to look at dresses realistically. Can I move in this? Is it too heavy? Am I going to fall over it over and over again. Though the natural thought would be…”oh, why don’t you just hem it so you won’t fall?” And yes, that’s as no-brainer. But here’s the thing, I fall even if there isn’t anything to fall over. And doing that in front of all the family and friends I love would seriously suck.

Wedding planning has been interesting as someone with a disability. For venue options, I had to take into consideration accessibility and whether I’d be able to easily get around. I ended up choosing a venue with a lot of flat, open space (despite it being in the NC mountains)! As I’ve stated above, I’ll have to consider it when finding a wedding dress. I’ll also need to be particular about the shoes I choose. I can’t walk in heels. However, I can walk in cowboy boots, and since my wedding will be on a ranch / farm, it’s pretty much a done deal. 🙂 Thankfully, I have a great pair of cowboy boots I bought with my mom when we went to Nashville a few years ago. I’ll just have to find a dress that ALSO works with my boots (and all the other requirements). Easy, right?

It may seem strange to realize just how much I’ve had to take into account while planning my wedding as a result of my CP. Sometimes, it gets me down. However, it’s my life. I’ve had to adapt ever since I was a child. It’s nothing new. Best of all, my fiancé and my bridesmaids and matron of honor are super supportive when it comes to all that. I’m sure they’ll be a big help with logistics on the big day. Plus, at the end of the day, I get to plan a wedding for exactly what I need, and no one else can say a thing. I don’t pull the disability card often, but if it means the difference between getting something I need vs. not having it, I’m going to pull out all the stops I can. It’s my wedding day, after all. 🙂

Though I’ve touched on this before, it bothers me that there’s a stigma of disabilities and love within society. Maybe not a stigma…but hesitation. It’s there. I’ve experienced it first hand, and I’ve observed many depictions in the media where a disabled person finds love and it become a news story….or my personal favorite…the article about two people with disabilities getting married. Hear me out, though. There is nothing wrong with two people with disabilities being together in an intimate relationship. If you find the one you love, and they have a disability too, but they also love you right back, then that’s wonderful. However, please don’t settle for a mediocre relationship just because you want to be with someone. And don’t think that just because you have a disability you won’t find love. I’m living proof that’s not the case. However, that also doesn’t mean that a disabled person in a relationship is newsworthy. It’s not. It’s every day life. Unless you’re a celebrity, are you going to have an article in the paper about your date to prom? No.

Was I overwhelmed by the dating process? Yes. Was I worried that someone might not want to be with me because of my disability? Also yes. But you know what? You don’t want to be with someone like that anyway. If someone’s put off by your disability, they aren’t right for you. Simple as that.

I by no means am a relationship expert in any capacity. I just have my own experience as a disabled person trying to find a companion for life. My fiancé does not have Cerebral Palsy like me. Truthfully, I had concerns about being with someone who also had CP simply because I knew the amount of help I’d need physically as I got older, and I wouldn’t want to put someone in a position where they didn’t feel comfortable doing that. Would I have considered it if the person I fell in love with also had CP? Maybe. I’ll never know.

What I do know is this: Find someone who cares. Find someone who loves you AND your disability, not just you (i.e. they don’t have to necessarily be thrilled about your disability, but if they have doubts about your ability to love or be in a relationship because of your disability, you deserve better). Find someone who you can talk to openly about disability logistics (and that right there is the cornerstone to my relationship). If my fiancé and I couldn’t talk openly about how my disability impacts our relationship, we wouldn’t work. Getting to that level of openness with a partner could take some time, but if you haven’t had a conversation about your disability and how it would work in the context of a relationship after a few months, maybe there’s a reason. It’s also possible that you may have no idea how your disability will impact / affect a relationship. That’s okay too. When I first started dating my fiancé, everything was uncharted territory regarding relationships. But we got through it together. We learned side by side. Sometimes we had no idea how to handle certain things. When we went on our first date, he didn’t know whether to help me or whether I’d take offense to that. *Hint, hint*: He asked me what he needed to do / how I wanted him to help me, and I told him. Sometimes I needed an arm to steady myself; sometimes I didn’t. Either way, I communicated my needs to him. Because news flash: someone doesn’t know you need help until you ask. And it’s okay to ask. If you ask, and they say no, run. That person’s a jerk. You’re better off without them.

Love is possible as a disabled person. The smartest love advice I was ever given was: “Stop looking. Love will find you when you’re doing the things you love.” However, I’ll amend that advice to say this: It’s highly likely you’ll find love when you stop relentlessly searching. However, don’t expect love to fall in your lap, either. I had to do my fair share of work in meeting my fiancé. For instance, I initiated conversation first. I approached him first. I knew enough to know I’d likely have to do that, which some may be frustrated by. And it’s certainly not required. I just knew I needed to be proactive, and I knew I didn’t want love to pass me by.

I was lucky. I have found a person to spend my life with who doesn’t view me as a burden. It’s possible for others with disabilities too. Trust me, I’m living proof.

The initial dating with a disability post I wrote back in March was such a hit that I wanted to do a follow-up. I think sometimes society has a hard time understanding that people with disabilities want the same things everyone else does: love, success, lifelong friendships. And those things are attainable for the disability population. However, it may just mean there are more logistics to figure out.

In the case of dating, for me that meant thousands of questions were going through my head: 1). When should I tell him about my disability? 2). How will he respond? 3). Will he care? 4). If we get serious, will he resent me for what I can’t do? 5). If we get serious, will he feel like my caretaker?

Even now, after my boyfriend and I have been dating for 3 and a half years, some of those questions still surface. However, we’ve dealt with them just like we’ve traversed the rest of our relationship: with openness, frequent communication, and love.

When should I tell him: Honestly, it was answered on its own. Because my disability is visible, it’s not something I could hide. No, I didn’t have a “I have CP” tattoo on my forehead, and I have never introduced myself to someone by saying, “Hi, my name’s Amelia, and I have CP.” However, I’ve always prided myself on being open with people. The reality of my disability came out pretty early on…and even though I fretted over how the conversation would go, it went as smooth as though I had said, “My day was good, how was yours.”

How will he respond: My Cerebral Palsy mattered to him, but it didn’t all at the same time. It didn’t prevent him from wanting to date me. However, it mattered in the sense that he wanted to understand it enough to know how to help me when he could, which I was grateful for. More than anything, he wanted to know how living with a disability shaped the way I viewed the world. And in that moment, I knew I wanted to spend my days helping him to understand the world I lived in: the world of oppression, marginalization, discrimination…but also the world of a culture that has its own language, values, history, and perspective.

Will he care: He did. But he cared in the sense of, “It hurts me to see you in pain,” as opposed to, “I don’t want a girlfriend who has a disability.” Yes, it’s part of our relationship, but it’s not the only piece. It means we have to do certain things certain a little differently, but it doesn’t prevent us from loving each other. However, I will say it does take a special person to care in this way. You want someone to care enough about your disability that they see it as part of you, but not so much that it is the only thing they see when they look at you. I’m happy to say that’s what I’ve found. And honestly, each day it amazes me. Sometimes it still takes my breath away that I’ve found someone who cares enough about my disability that he has taken up the disability fight out of sheer love for me. For example, the first time my boyfriend became enraged when he saw a car parked in a handicapped space without an appropriate license or placard…I felt heard, I felt seen, and finally, I felt like I didn’t have to face the injustices of the world alone.

If we get serious, will he resent me for what I can’t do: Honestly, I still worry about this one. Since we are serious, it’s a thought that bounces around in my head pretty regularly. And since we are so open with each other, it’s also conversation we have often. Do I think he resents me now? No. Do I think there are things he wishes we could do together that my disability prevents? Sometimes, yes. The majority of those things have been centered around activities that require extended walking. However, about a year ago, when I invested in a mobility scooter, a new world opened for us. With my scooter, I was able to get out and be more active and not be as easily exhausted like I’d get if I was walking everywhere. Therefore, we’ve been able to enjoy things like going to the mall or walking around downtown, whereas previously I’d avoid those things because more walking meant pain…and pain meant both of us being unhappy. However, in another sense, sometimes I worry how my disability will impact me as I age. What if in two years I can’t do what I’m doing now? I’d be lying if I said I didn’t worry about it. But if I know one thing, it’s this: I’ll figure out a way to handle those obstacles as they come my way. I always do. It’s who I am.

If we get serious, will he feel like my caretaker: I still worry about this one too. It’s a conversation we have very openly, as neither of us wants to reach a point where we have a caretaker/patient relationship. Honestly, what’s made the difference is understanding and perspective. Are there things he has to help me with? Absolutely. But do I help him with aspects of himself that are weak because those are my strong areas? Yes. At the end of the day, that’s what it’s all about. The give and take. In my case, many of the ways my boyfriend supports me are physical in nature, but he’s also incredibly kind, loving, and caring too. When I look at a caretaker/patient relationship, I see it as very one-sided. And that’s not what our relationship is. It’s two people supporting and strengthening each other to be the best versions of themselves.

At the end of the day, dating with a disability is just the same as typical dating, but with a double scoop of openness, communication, understanding…and a dash of humor (because if we’re not laughing through life, what’s even the point).

Imagine waking up one morning, but before your feet even touch the floor, you can feel pain radiating from your hips and into your lower and mid back. You didn’t do anything differently the day before. You didn’t lift something too heavy or strain a muscle while exercising. This is just your normal. No amount of Advil, Extra Strength Tylenol, or deep breathing can ease the dull, yet persistent ache you feel throughout your entire body. As you surrender to the realization that today will be a difficult day pain wise, you get up, knowing that you can’t stay in bed all day, even though you’d prefer that over living in the hell that is chronic pain. You stand up, and while that feels like a feat in itself, the true test will be attempting to move.

You move your hand along the mattress and then transition to trailing your hand along the wall in order to make it to the bathroom, shuffling your feet slowly and cautiously. You do this because of how uneasy you feel. However, you know in the pit of your stomach that simply placing your hand against the wall won’t prevent you from falling due to your already unsteady balance. Right when you make it to the bathroom door, there is a millisecond when you know what’s coming. You see it play out as it has so many times before, but there is nothing you can do to stop it.

Your breath catches in your throat. As you fall, your arms shoot out in front you, trying to grasp onto a chair, a door handle, anything to prevent you from going all the way down. But your hands come up empty. You hit the floor, falling back-first into the door jamb. The breath is knocked out of you, there is a shooting pain coming from your hip joint, and you want to cry out. You open your mouth. Just as the darkness of early morning envelopes you, so does your own silence.

With shaky hands, legs that feel like jelly, and tears streaming down your face, you turn onto your hands and knees and push up with as much strength as you can muster, using the stability of the wall near you to stand back up. You’re standing again. You feel steady. But you know, in the back of your mind, it’s only a matter of time until it happens again. Until your body decides to let you down and you fall, again.

And yet, that moment, that moment of falling again and experiencing a pain that radiates like fire through your bones, that moment has not yet arrived. There is relief in the continuous shallow breaths you take as your world comes into view again. Your world is one of never-ending pain, but it is also one of gratefulness. Gratefulness towards the boyfriend who offers you his arm for support. Gratefulness towards the best friend for consciously slowing down her pace so you don’t feel left in the dust. Gratefulness towards the body that, no matter how painful, is still moving…still allowing you to stand back up, just one more time.

Even though I eventually got lucky with my boyfriend (who I’ve now been with for 3 years), the dating scene was intimidating for me through all of my teen years and throughout college.

I used to consistently doubt that I’d even ever find someone to be with because I thought, “who’s going to love me that way with my physical disability?”But the point I’m trying to make is this: that thought wouldn’t have entered my mind so strongly were it not for societal perceptions of disability. People don’t think about disability and intimacy in the same sentence. That may be harsh, but it’s true. I know this because it’s been my reality.

I remember when I was a teenager and I started liking boys. I went through the typical phases of having crushes, but with an added hiccup. I constantly wondered whether the boys who liked me actually liked me or if they felt sorry for me due to my disability. Most of the guys I ended up liking in those early years were the boys who were consistently nice to me, and because I was so used to being indirectly bullied through school, I gravitated to the boys who treated me with kindness and friendship that felt genuine and real. However, even with those boys, the crush was only one sided, and I was “friend-zoned.” I liked them in the “I want you to be my boyfriend” sense, but they just wanted to be friends, and that was heartbreaking for me at the time. It took me years to realize that those friendships were not only real, they were the kind to stand the test of time and still be strong throughout the seasons of life.

I should also add that up until my junior year of high school, I attended private school, and at my private school, I was the only student with a disability. Being surrounded by friends who had no problem getting boyfriends was consistently frustrating. I watched my friends with their boyfriends, knowing they didn’t have the added challenge of wondering if someone would ever take them on a real date as opposed to a “pity date.”

It wasn’t until I was in college that I started feeling more comfortable with guys. Yes, I still had a lot to work through, but in the weird (and wonderfully hippie) city of Asheville, I had finally found a place where I belonged. Throughout my sophomore and junior years of college, I still had some experiences with guys that weren’t ideal and didn’t last, but I was learning. Once, I started talking to a guy who worked at a nearby bakery. When one of the first texts he sent me was, “Are you even capable of having sex?” I blocked his number and never talked to him again. In another instance, I had a few dates with a guy who was incredibly outdoorsy but also incredibly full of himself. While he was initially respectful of my disability, he later wanted to be intimate before I was ready. When he would not respect my decision to wait until I felt comfortable, his inner jerk surfaced, and he said “But no one’s ever said no to me before.” My response, “Looks like I just did.” I kicked him out of my apartment and my life.

I should note that even these early experiences taught me a lot about dating and relationships, and especially dating with a disability, and they helped prepare me for when I would meet the right guy. My friends and family will tell you that I spent years wanting nothing more than a relationship. I used to get so discouraged when they’d say, “It’ll happen when you least expect it.” Turns out they were right.

Sometimes it blows my mind that the first guy I entered into an actual relationship with ended up being the one that stuck. But in other ways, it made total sense. We met in an unconventional way, but looking back on it now, I know that we would never have crossed paths had we not met in that way. By the time we met in my senior year of college, I knew what I was looking for in a guy: someone who treated me with kindness, had a good sense of humor, and wasn’t at all repelled by the fact that I had a disability. When I first met my now-boyfriend, he was all those things and more, and within a few weeks, we were completely smitten with each other.

However, I was still unsure of a lot. I was unsure whether this was a guy that could see my disability, but also see that it was only a piece of me. I didn’t know whether he would comfortable with the fact that I have certain limitations that are always present. But more than anything, I knew I didn’t want to screw this up. For once, I didn’t want my disability to prevent me from experiencing something I really, truly wanted.

I remember the first time I caught my boyfriend staring at me. We were in the kitchen of my apartment, and I was washing dishes. I glanced over, and he was staring right at me. Confused, I responded with “what?” See, up until this moment, I had been stared at my entire life because of my disability, and I couldn’t even fathom that someone staring at me could be a positive thing. When he responded with, “I’m just looking at you,” I broke down crying. I broke down because I was falling for him, and I broke down because for the first time, I truly felt seen. For once, I wasn’t being stared at because of my differences. And for the first time in my life, a guy wasn’t just seeing my CP, but every single part of me…and it was wonderful and terrifying all at the same time. But it was love. It was our story. And it was only the beginning.

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